We are committed to making a difference for those families whose children have been diagnosed with Usher syndrome in Australia. Our Strategic Plan is guided by our three founding principles – Identify – Educate – Support
To ensure all those with Usher syndrome are known to our community to assist the collaboration of research efforts both here in Australia and globally.
Providing information to newly diagnosed families, as well as educating health care professionals, educators and support staff on the needs of our children to maximise inclusion and best clinical practice.
Providing support to families, children, siblings, health care professionals, communities, sporting clubs, schools, service providers and all those who are part of the care and education of children with Usher syndrome to ensure they have the knowledge, resources and skills to ensure our children can thrive in their everyday endeavours.
Advancements in genetic and genomic testing make earlier diagnosis of rare genetic conditions such as Usher syndrome accessible to more and more children born with a hearing loss in Australia. This earlier diagnosis leaves a distinct gap in the provision of services and support for families, as well as an evidence-based clinical pathway for clinicians to guide their care for children with Usher syndrome in Australia.
As well as providing direct support to children with Usher syndrome and their families, UsherKids Australia works to create a conduit for clinicians, researchers, service providers, educators and the general public to come together in the care for children with Usher syndrome.